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Thursday, November 1, 2012

Guest Post: Five Lessons Learned on Being a Patient

Last summer, I was enjoying a relatively smooth second pregnancy despite my “advanced maternal age.” It was a warm, sunny Sunday afternoon, closing a (miraculous) full weekend off of clinical shifts. I lay down to take a little nap; my then-two-year-old daughter climbed into bed next to me. Suddenly – life changed. I felt a gush of fluid, and knew that I was either bleeding or had broken my water. To my dismay, it was blood. A lot of blood.

At that moment, I made the transition that all doctors will make at some point in their life, but which we all fear: from physician to patient.

I was now G2P1, EGA 31w2d, with a spontaneous abruption, praying to feel the baby move. I had no history of trauma, no cocaine use, no history of bleeding disorders. My husband (who was, luckily, at home) scooped up our daughter and me and drove at what felt like 100mph to the hospital. I sobbed in fear the whole way. Thank god, on arrival to the hospital, our little one had a healthy heart rate. But I was still bleeding, and contracting, and had some cervical dilation. What followed: 8 long hours of being NPO in fear that I’d need an emergency C-section. A long discussion with the NICU fellow about prognosis if my little one needed to be delivered that night. An admission to the labor & delivery floor “just to watch.” Then a week in the hospital. Then 2 months on bedrest.

No one knew why I had spontaneously abrupted, and therefore no one could say if or when the abruption would recur. Although no large clot had been visualized on my ultrasound, that didn’t mean that my placenta was okay. I was a nervous wreck, hoping my little one would gestate until he was big enough to avoid the NICU.

Thank goodness, nothing happened over those long 2 months. I had occasional contractions, occasional spotting, no bright red bleeding. And 1 week shy of my due date, my son was born, small but healthy. And I was healthy. I realize how incredibly lucky I am, and how much tougher things could be.

Still – it was the scariest two months of my life. And it has changed my way of doctoring. I walked away from this experience with 5 major lessons for my own practice of doctoring.

1. Empathize with patients’ and families’ anxiety.

I now understand why people over-interpret their symptoms. I get why the patient with a history of CABG comes back to the ED every week for twinges of chest pain. (“What if?.... Last time… I don’t want to be home alone….”) Often, my primary role as a doctor in the emergency department is to assuage this anxiety, especially if patients have had a long wait prior to being dispo’ed.

2. Be honest about a lack of knowledge, and explain what we can given the limits of our diagnostic/prognostic ability.

I am a physician, and understand medicine! But I am not an ob/gyn, and have been out of residency for more than a few years. The only abruption I saw during my training resulted in a stillbirth, so had no practical experience in this diagnosis. Scarier yet, even among my ob/gyn’s group, management of moderate abruptions differed. This was scary. Luckily my personal physician was stellar at making me feel comfortable both with the lack of an evidence base, and with the recommendations she made.

For my patients who are sent home without a diagnosis or clear prognosis, I now try to acknowledge my frustration with this fact, and give an outline of both what I know they do NOT have (e.g. “I am pretty sure your really bad headache isn’t a bleed, or a tumor, but I’m not really sure what’s causing it”) and an outline of when/why they should come back. I make sure they feel heard, and reassure them, which is often the whole reason they sought medical care in the first place: just to make sure they were okay.

3. Don’t be offended when patients ask for their personal physician when they present to the ED.

In a moment of fear, you want someone you can trust. I was lucky that my personal ob/gyn was on call the day of my abruption. I’m not sure how I would have responded to non-evidence-based recommendations had they come from someone other than her.

Now, when patients’ first words on seeing me are: “Have you called my doctor [X] yet?” – I tell them how lucky they are to have such a great doctor as their PCP/cardiologist/whatever, and reassure them that I will work closely with her/him.4. Give good, thorough discharge instructions.

I left the hospital not understanding exactly what “bedrest” consisted of, and how much I could/could not do, and what would/would not increase my chances of doing well. I think this was because no one really knows the right answer! Still, not knowing was very tough for me at first, as I was scared stiff of re-aggravating the abruption.

I now try to be as clear as possible with my patients about what their instructions mean. (What is “weight bearing as tolerated”? When can they stop taking Motrin? At what point should they return to the ED or their PCP?) … .This often involves rewriting or augmenting our computerized discharge instructions, of course.5a. Acknowledge, and encourage, the use of social supports.

Being sick is scary. And I wasn’t even physically sick – I was more worried about my fetus! I can only imagine how difficult life must be for my patients with limited support systems, no money, and fear of losing their job if they stay out of work. I know how tough it is for people to ask for help, but I encourage them to do so, for their own sake.5b. Encourage the exploration of online support groups – Especially for chronic conditions, or diseases with little evidence base, the online community is a godsend. For me, it was my only “good” source of information (although it was also a source of fear, if I didn’t triage sources well). Heck, think of how important mothersinmedicine.com is for all of us!

Before my abruption, I was already interested in the use of technology to support patient engagement and behavior change. After two months of bedrest, I became an evangelist for “mhealth”…

Of course, I don’t think that I was non-empathetic at baseline. I am, honestly, one of those people who always wants to be liked. But now I try to listen more. I try to ask what patients are scared of. I try to reassure more, and to include patients’ families and social supports. I try to give clearer indications of “if/then” and “what if” scenarios: e.g. “I don’t think you’re having a stroke, but here are the things to come back for, and here is what I think is going on”. I now try to explicitly acknowledge patients’ and families’ fear, and encourage my patients to turn that fear to good service: to use it to increase their engagement with their families, the online patient community, and their own bodies.

Most of all, I am now actively researching ways to use technology to facilitate patient engagement with their own health. I don’t want this message to stop with me.

I welcome thoughts, comments, or partnership in so doing!

Emergencymom is an academic emergency physician and public health researcher on the East Coast. She is proud mother of 2 (aged 4 & 1), and wife of a small-business-owner. Her work-home balance is precarious, but generally enjoyable. She still can't believe that she gets to do research for half her work-week! She welcomes suggestions on how to get 4-year-olds to stop whining, how to have dinner cook itself, and how to not be perenially 1 hour shy of a good night's sleep.

8 comments:

Great post and glad things turned out well for you. It would be great if we could figure out a way to make all medical students experience being a patient for a few days-- it's hard to understand without experiencing it, no matter how empathetic you are.

I spent 5 days in the hospital (student health) with Ebstein-Barr Virus hepatitis as a third year medical student. My key take homes:1) tell your patients if they have a blood draw scheduled. I am needle phobic (I know, seems weird for an anesthesiologist), so when the phlebotomist awakened me to draw my blood, it freaked me out. Had someone said, "You're yellow so we want to check your LFTs," it would have made all the difference.2) provide means for patients to communicate with their medical team. I had a horrible headache and couldn't sleep. When the team came by for 2 minutes at 7 am, I didn't have the wherewithal to interact. Later, I would realize that a sleeping pill might be useful. After 3 days, I finally figured out that my nurse might be helpful in this regard and, bingo!, there was my flurazepam. Great night of sleep and headache gone in the morning.3) I wasn't a very good patient, but the care providers could have made me a better one. As I said, I don't like needles, so I refused an IV. Which I now realize would have made a huge difference. But when I refused it, they didn't even try to talk me into it.

I think the biggest issue is that we want to communicate with patients within our own time frame, but what works is adapting to theirs. And then we blame patients for not adapting to ours.

Great post, Thanks so much for sharing! And, great comment above. I'm a medical student and I agree that being the patient (and a real patient, not standardized) is probably one of the most important learning experience we can have. I don't usually put my own plugs in comments, but my son was in the NICU for a week after he was born. While I wasn't the patient, I was the parent of a patient and the whole time we were there, I was thinking about how that experience will impact my future practice in medicine. I spent some time reflecting on it and wrote about it once we were home and recovering (http://medicalschoolmommy.blogspot.ca/2012/04/ultimate-learning-experience.html). Reading this post has reminded me about this experience, and how I am already starting to forget the emotional value of that experience. I am glad I reflected on my experience when it happened, I am glad that people like you are sharing similar experiences, and I hope there can be more conversation about it in our medical careers.

I, too, had a low risk pregnancy until I was admitted at 28 weeks with bp of 160/100 and my son was born 3 days later by emergency c-section. I was hospitalized for a week and he was in the nicu until his due date. Having never been sick myself, the experience was eye-opening and an example of how kind, caring and supportive staff can make all the difference during those stressful months. Really, the one thing that struck me over and over when I was hospitalized and very sick was how NICE the residents, attendings and nurses were to me. At 3 am. When I was asking a lot of questions and, frankly, being a PIA because I was freaked out. They were saints. My story also has a happy ending since my son is 100% healthy and thriving. It's easy, in retrospect, to look back and think that the experience was no big deal knowing the outcome but it's hopefully an experience I'll keep with me when caring for patients.

Wonderful post! Well-written as well. My patient experience is limited to my L+D experiences (1 emergency c-section and one VBAC), and I agree, I learned alot from those... about patient anxiety, yes, and about communication... but especially about pain. Respect the patient who is complaining of pain. This was an excellent post, really appreciate it.

It’s unbelievable how fortunate I feel after finding your email: humenhealingtemple@yahoo.com For the past 7 months, I have been so depressed after losing my fiance to another woman. My money situation worsened so much that I thought I’d have to file for bankruptcy. I had a huge amount of debt and I didn’t know what to do. Out of complete and total desperation, I contacted many of those so-called individuals who promised powerful magic, witchcraft or black magic. None of them worked and none were as wonderful, affectionate and warm as Humen has been. He is definitely different from the others and I felt immediate hope and strength from hearing about the promises he had to offer. He carries an air of purity and divine strength that is as pure as fresh snow on the ground. I requested Humen's most powerful spells and I was relieved right away that I had someone to solve my problems for me. His spells worked wonders and I am now back with my fiance and my money troubles resolved itself after winning the lottery. Humen, I have no idea what I would have done without you being there to help me out.

KC I absolutely love your post!!! I believe every doctor should have experiences similar to yours. My parents have medical and you wouldn't believe the type of treatment they get with their regular doctors. There are never any closing statements they just leave without asking if they have any questions or concerns. I went to my mother's appointment and her neurologist rushed out of the room after examining her neck. I quickly ran after her and told her that she should be a little more sensitive before she makes her way out. There I saw a huge disparity in the care of medical recipients, I have kaiser and let me tell you that I have never been treated like that. Just because the taxpayers are paying for your health insurance it shouldn't mean you have to treat people less.

@ZJS - Thank you! Your mom is very lucky to have you as her advocate :).

@generallymedicine, Ginevra, and the other poster from 11-1 with a long tag - It's interesting how many of us had our first "sick" experience during pregnancy. Scary, actually. Glad you & all of your kids are okay.

@hh - Love your point about being on the provider's time frame versus the patient's. This is something we should all keep in mind (but it's challenging on a day-to-day basis!).

Mothers in Medicine is a group blog by physician-mothers, writing about the unique challenges and joys of tending to two distinct patient populations, both of whom can be quite demanding. We are on call every. single. day.

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